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Crouzoun-Pfeiffer syndrome

On the surface, at least, Doug Mazza had life by the horns. As senior executive of American Suzuki Motor Company, he wrote the business plan introducing Suzuki automobiles to the U.S. He later became chief operating officer of Hyundai Motor America.

Through it all, Mazza was managing another challenge at home. “My third son, Ryan, was born in 1976,” said the 61-year-old former automobile executive in a telephone interview from his California home. “He was born with Crouzoun-Pfeiffer syndrome. It caused horrendous deformities to the bone structure of his skull and face. For me, the world stopped turning.”

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According to a National Institutes of Health website, the syndrome is a genetic disorder “characterized by the premature joining of certain bones of the skull during development, which affects the shape of the head and face.”

Said Mazza, “Ryan wasn’t expected to live. He had 13 major brain and skull surgeries his first three years and most were live-saving attempts to fight what this terrible syndrome was doing to his young body.” Ryan’s condition forced Mazza to question: Why was there suffering? Was there a purpose behind it?

He also began wondering if his son would ever have a place in the world. “The corporate world requires more conformity than it would like to admit,” said Mazza. “In the automobile business you have to be creative, on top of your game, and look good in uniform.”

Though not able to “look good in uniform,” Ryan would have a special place in Mazza’s heart. Amazingly, Ryan is 31 and alive today. He is blind, mute, receives nourishment through a tube, and can’t sit up in a wheelchair without help. Many people would say he’s in a persistent vegetative state.

“All that,” said Mazza, “yet Ryan knows my voice and lights up when I speak. He loves it when I read him the Bible. I know that because he smiles all the way through (the reading of) it.”

In the late-90s, Mazza had some answers to his questions. Leaving corporate America, he joined Joni and Friends, a faith-based organization serving people with disabilities. His corporate background prepared him for “what God has me doing now” as president, he said.

He occasionally counsels parents of a newborn with a disability. In the early stages, he said that just “being there” for them often is enough.

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